Medical Records Family History

throwaway4372

throwaway4372

throwaway4372

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Oxon
Anyone know what the deal is around accessing medical records of parents, grandparents, etc - to learn about your risk factors of whatever conditions they may have had? I've had my GP ask me if there's any family history of whatever condition but due to circumstances the GP is the one with the records and I have very little information at all. It seems I should have the right to at least ask the GP to check the records to find out rather than just asking me?
 
Surely they are confidential unless your grandparents have given their GP permission to disclose them (even if they are no longer living).

However you can pay private companies to check your DNA for certain risks. Or you could ask other family members if they have any info. You could also try to get a copy of their death certificates (assuming they are dead of course).
 
I have a rare genetic condition. Luckily I know of another person in the family who has it. Though me and her are very distant relatives. But it's that rare and only appeared twice in the family that the consultant couldn't see a pattern. In other words for a doctor to say yes you will pass it on, there needs to be a pattern of the condition in your immediate family.

Who suspects you have a condition? If they, or you, suspect you have a certain condition, why can't they genetically test you? I was offered genetic testing recently for my condition. So I know the NHS has the ability.

I would say that if none of your immediate family (brothers, sisters [any of their kids], parents, grandparents) has any significant condition then you're probably as safe as anyone else.

Surveyor said:
If they're alive: Can I access someone else's medical records (health records)?

If they're not: Can I access the medical records (health records) of someone who has died?
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The person who's died, the rules seem overly restrictive.

It really should be a time limit of X amount of years after death, and you are a direct line descendant.
 
BowdonUK said:
I would say that if none of your immediate family (brothers, sisters [any of their kids], parents, grandparents) has any significant condition then you're probably as safe as anyone else.
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This is kind of the point. I wouldn't know if they did have a condition I may have because they probably wouldn't tell me (they are not loving/honest/reliable/trustworthy people). So the doctor asking me is pointless. The only way to assess my risk would be to source the medical records of relevant family members. I don't need to see the records, I just need the doctor to take the extra step of bothering to look. They obviously asked me about family history because it matters, so to then accept not getting an answer, when the data is available to answer the question properly is totally unacceptable imo.
 
How about a DNA test, if what you are worried are hereditary diseases, that would be a very good starting point.
 
throwaway4372 said:
This is kind of the point. I wouldn't know if they did have a condition I may have because they probably wouldn't tell me (they are not loving/honest/reliable/trustworthy people). So the doctor asking me is pointless. The only way to assess my risk would be to source the medical records of relevant family members. I don't need to see the records, I just need the doctor to take the extra step of bothering to look. They obviously asked me about family history because it matters, so to then accept not getting an answer, when the data is available to answer the question properly is totally unacceptable imo.
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I think there is only 2 options in this if none of your immediate family appear to have any medical conditions;

1. Just assume you have no medical condition.

2. If you suspect you have a condition then try and get genetic testing to see if you're predisposed to particular genetic conditions.
 
I suppose if this condition were the cause of the relatives demise you could get a copy of their death certificate, which is a publicly accessible record, for a small fee. Otherwise unless cremated you could dig `em up and hope for some useful DNA ;)

More practically a doctor might be persuaded of the ethicality of accessing a dead relatives records, and without disclosing the contents per se, make a firmly worded recommendation for suitably precautional treatment or testing to you.
 
Chris Wilson said:
I suppose if this condition were the cause of the relatives demise you could get a copy of their death certificate, which is a publicly accessible record, for a small fee. Otherwise unless cremated you could dig `em up and hope for some useful DNA ;)

More practically a doctor might be persuaded of the ethicality of accessing a dead relatives records, and without disclosing the contents per se, make a firmly worded recommendation for suitably precautional treatment or testing to you.
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It's a nice idea, but typically anything involving actual work you will just get told no by the GP.
 
andybird123 said:
It's a nice idea, but typically anything involving actual work you will just get told no by the GP.
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Or more likely the GP understands the laws about patient confidentiality and won't want to risk their career by breaking them when there are methods in law to do it.

It's also worth noting that there is a very good chance the "GP" won't retain the records for long after the patient dies, they'll likely get sent to secure storage for a while then probably for destruction. Storage of patient records is a major PITA for most practices (especially older paper ones*), and the online systems they use will probably have good logging and auditing of access requests to prevent abuse and there aren't many legitimate reasons in the law as to why a GP will be accessing a dead patients records.


*I'm not sure if records prior to say the early 00's have been fully digitised yet, and it's fairly safe to assume records of patients who died before the routine full use of digital records are probably right at the bottom of the queue for it, assuming they've not been destroyed already/will ever be done.
 
throwaway4372 said:
I might look into that, don't know if that would detect this particular thing the doc was asking about though, I'll ask the doc next time I'm there.
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We used 23andme, if you go on their website they list every disease they look for and which variants. That's if you know what you are looking for. It's worth noting it took 3 months to get results for us.
 
Given the apparent problem in a GP accessing medical records of a deceased patient, even in a 100% altruistic capacity, what the original poster needs is a bent doctor, there are plenty around, but a kind of one hundred and eighty degrees out of phase to Dr. Harold Shipman type ;) I am surprised that this hasn't been addressed in law, it must have potential benefits to the patient and to future health care costs. Should anyone know where a GP might be found at the moment, maybe it's something they could electronically pose to the authorities whilst "unavailable in person"?
 
Lopéz said:
I think you're not clear on the definition of murder.
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I think you're not clear on the point I was making. I've edited my post to help you.

throwaway4372 said:
wow, so basically you don't get informed of hereditary conditions because of privacy. Seems like murder to me.
Surveyor said:
If there's a family history of hereditary conditions then your family should have informed you. If they didn't it seems like murder to me :rolleyes:
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throwaway4372 said:
This is kind of the point. I wouldn't know if they did have a condition I may have because they probably wouldn't tell me (they are not loving/honest/reliable/trustworthy people). So the doctor asking me is pointless. The only way to assess my risk would be to source the medical records of relevant family members. I don't need to see the records, I just need the doctor to take the extra step of bothering to look. They obviously asked me about family history because it matters, so to then accept not getting an answer, when the data is available to answer the question properly is totally unacceptable imo.
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the problem is as soon as the doctor looks at your relatives notes and documents what it shows in your record in a way to impact on decision making for you then confidentiality has been broken as you are allowed to see your own notes. The fact that they didn't tell you personally or the fact that you would promise them you would never look is irrelevant. 3rd party information on someone's records should ONLY be put on the record if it came from the person whose record it is. If you tell me your dad had a heart attack aged 52 I can put it on your notes, but if I know he had a heart attack but you didn't then I cant put it on.
 
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